September 20, 2010 11:32 AM   Subscribe

Tell me about your cluster headaches and what you do to cope with them.
posted by mandymanwasregistered to Health & Fitness (8 answers total) 4 users marked this as a favorite
I get VERY VERY MILD ones. Lying down in a dark room and icing up my trigeminal nerve for half an hour works wonderfully.

There is a growing community of people (if no solid scientific research, for obvious reasons) who suffered from severe cluster headaches, and discovered that they were all but eliminated after taking psilocybin (magic mushrooms) ONCE. For many, it's apparently a magic (if illegal) bullet.
posted by julthumbscrew at 11:34 AM on September 20, 2010

I used to get quite extreme ones. Psilocybin/LSD seemed to do the trick for me. I haven't gotten one in forever.

I remember reading that potentially any hallucinogen will stave off the cluster headaches for at least 3 years, though in my experience so far I have been going on for a while (5+) without any cluster headaches.

So, yeah, illegal but definitely wonderfully magic bullet.
posted by lizarrd at 12:37 PM on September 20, 2010

Here is the link to be able to access the study I remember hearing about (pay of course):
Response of cluster headache to psilocybin and LSD

This seems to be a link to it.
posted by lizarrd at 12:42 PM on September 20, 2010 [1 favorite]

Psycobilins work for me for a few years each time as noted above. Beta blockers keep them at bay too, and work great for my migraines but you have to take them every day. Cheap though, especially at the low dose I'm on.
posted by fshgrl at 12:46 PM on September 20, 2010

While I've never had them myself, my sister used to get crippling ones. They were cyclic and occurred for a few months straight at almost exactly the same time at night. She took some kind of popular anti-arthritis medicine that really helped. Celebrex maybe? Also, her headaches had begun after brain surgery to remove a blood-clot. Eventually they ran some dye through and did a CT or something like that and found that a nerve had been caught during the closing. No idea why they acted the way they did, but they were able to deaden the nerve and cure her.

Mushrooms sound like more fun though
posted by Raichle at 1:02 PM on September 20, 2010

My mother has them, and WOW, are they intense. Her front line abortive is oxygen therapy--it is pretty much the only thing that has worked for her.

As a side note, she changed doctors several years ago and had an experience that made me want to go and throttle the new doc. Mother had the diagnosis of clusters from her previous md, and was being successfully treated with oxygen. This new doc told her that "women don't get clusters, and even if you did, I can't see how oxygen would help. I've never heard of that." Doc wouldn't rx the oxygen. This made my mother doubt her own experience of her headache, and of the efficacy of the treatment. I sent REAMS of info to her to assure her that her own experience and the data backing it up negated the OPINION of this ill-educated quack. My take-away from this (and my own experience with run-of-the-mill migraine) is: try to find a doc with a special interest in headache, or who has headache, or a family member with headache, themselves.

Sorry so shouty, but clusters are shouty, and I still get pissed thinking about my poor mother's experience that I feel amounts to malpractice.
posted by thebrokedown at 2:51 PM on September 20, 2010

Lying down in a darkened room, taking some ibuprofen for the pain and going to sleep until they've gone away is the only thing that's ever worked for me.

I've never tried the mushroom thing though: Fortunately, I only get a cluster headache once every couple of years, so it's not too debilitating.
posted by pharm at 1:08 AM on September 21, 2010

Cluster headache pain is the absolute worst three weeks I have every year. So much pain! It's very depressing. For me the only thing that works is to get up immediately, run out the door and run as fast as I can for as long as I can until my heart feels like it's going to explode and my body almost collapses from exhaustion. A few weeks of this, and it feels like it will never go away, and that's when I start getting really dark thoughts. But, remember that they always end (for a while at least).
posted by TheOtherSide at 4:46 AM on October 13, 2010

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